Committee for Health

OFFICIAL REPORT (Hansard)

Severe Fetal Impairment Abortion (Amendment) Bill: Down's Syndrome Research Foundation; Don't Screen Us Out

17 June 2021 NORTHERN IRELAND ASSEMBLY

Committee for Health

Severe Fetal Impairment Abortion (Amendment) Bill: Down's Syndrome Research Foundation; Don't Screen Us Out

17 June 2021

Members present for all or part of the proceedings: Mr Colm Gildernew (Chairperson) Ms Paula Bradshaw Mr Alan Chambers Ms Órlaithí Flynn Ms Cara Hunter Ms Carál Ní Chuilín

Witnesses: Ms Lynn Murray Don't Screen Us Out Dr Elizabeth Corcoran Down's Syndrome Research Foundation UK

The Chairperson (Mr Gildernew): I apologise to Elizabeth and Lynn for the delay in the meeting. We had to suspend the meeting and return following the unscheduled plenary session of the Assembly. I appreciate that you are back with the Committee at this point. I welcome Dr Elizabeth Corcoran, chair of the trustees, Down's Syndrome Research Foundation. Can you hear me, Dr Corcoran?

Dr Elizabeth Corcoran (Down's Syndrome Research Foundation UK): Yes, Chair.

The Chairperson (Mr Gildernew): I welcome Ms Lynn Murray from Don't Screen Us Out. Can you hear me, Lynn?

Ms Lynn Murray (Don't Screen Us Out): I can hear you. Can you hear me? I had problems with my laptop, and I am on my phone.

The Chairperson (Mr Gildernew): We can hear you, but the volume is a little low. Can you speak as loudly as possible? I advise members and witnesses that sound is improved with the use of a headset, and I remind everyone to put themselves on mute when not speaking. Dr Corcoran, can you give us a brief five-minute presentation? Afterwards, members will ask questions.

Dr Corcoran: Yes. Thank you for the invitation to speak at the Health Committee today. A dearth of research on Down's syndrome led to a parent initiative to establish the Down's Syndrome Research Foundation in 1989. The aim was to improve the health outcomes for people with Down's syndrome. Today, I speak as the Chair of the Down's Syndrome Research Foundation, and I have held that role for over 10 years. I also have a background as a doctor psychiatrist.

1 Over the years, it has been a challenge for my charity to fund and establish research projects in the UK, and, indeed, worldwide due to prenatal screening programmes and high termination rates. In fact, recent research found that people with Down's syndrome die 28, years before those who do not have the condition. The research accentuates the urgent need for more high-quality research as many of these deaths in the learning-disabled community are avoidable. In fact, the report from the Learning Disability Mortality Review (LeDeR) has just been released.

Survival rates for people with Down's syndrome have improved, mainly thanks to better inclusion in mainstream society, freedom from institutions where they were dying at a young age and the opportunities that being in the community affords them for general healthcare. However, even in the 1990s, people with Down's syndrome were still not being offered the health care they needed such as life-saving heart operations. However, hard-fought victories have been achieved, and even babies with Down's syndrome who require heart operations can expect to be offered that surgery. That surgery is successful over 90% of the time.

Unfortunately, we know from our recent Freedom of Information request that only about £5 per person per year is spent on treatment and intervention studies for people with Down's syndrome. In comparison, we know from the Freedom of Information request that, between 2010 and 2018, the National Institute for Health Research (NIHR) and the Medical Research Council (MRC) spent £5·4 million on improving the screening programme; indeed, the NHS spends over £30 million every year on antenatal screening. Hence, the 40,000 people living with Down's syndrome in the UK still have to deal with something called diagnostic overshadowing and a lack of focused health screening and specialised treatments. The routine offer of screening has not led to any therapeutic benefits for the Down's syndrome community, even down to enhanced counselling or care pathways for expectant mothers. Those still largely do not exist. In maternity care, women's decisions after it is found that the baby has Down's syndrome are questioned repeatedly. We were involved in the development of a publication of a report that confirms that many women are subject to subtle and not-so-subtle pressure to terminate their pregnancies. The Royal College of Obstetricians and Gynaecologists (RCOG) reiterated that issue as part of a recent statement on the care of women who are offered screening.

Whilst the choice to terminate based on disability may appear to be helpful for women, disability abortion has a more worrying aspect to it, as observed in the statement by the Royal College of Obstetricians and Gynaecologists. When RCOG was questioned by the UK National Screening Committee on its decision not to provide the new non-invasive prenatal testing (NIPT), it said:

"If the decision has been made primarily on cost grounds, then a more rigorous economic analysis has to be made that includes the lifetime costs of caring for children and adults with Down’s syndrome".

In the years following the 1990 Human Fertilisation and Embryology Act (HFEA) and its section that allowed abortion up to birth in the case of disability, there has been a notable comment made on the matter. The Disability Rights Commission, now the Human Rights Commission, made it clear that the section:

"reinforces negative stereotypes of disability and ... is incompatible with valuing disability and non- disability equally."

In 2017, the UN Committee on the Rights of Persons with Disabilities inquiry concerning the UK of Great Britain and Northern Ireland recommended that abortion law be amended to stop the legalisation of:

"selective abortion on the ground of fetal deficiency."

The Disability Rights UK charity also commented on the section. Its CEO said:

"fundamentally it is about equality. Wherever Parliament sets the number of weeks after which abortion is not permitted, it should be exactly the same whether the pregnancy is likely to result in a disabled or a non-disabled child. All lives are equal."

We fully support Paul Givan's Severe Fetal Impairment Abortion (Amendment) Bill. This is a time in the UK where, as a society, we have come to understand that a life with a disability is a good and fulfilling life. This belief is reflected by the UK's commitment to equality for everyone. All our laws should reflect that. Abortion law is no different in that respect. We believe that, as laid down, regulation

2 7 of the Abortion (Northern Ireland) (No. 2) Regulations 2020, "Severe fetal impairment or fatal fetal abnormality", will perpetuate disability stereotypes. Our opinion has been drawn from the promoted standards around equality, together with our experience of over 30 years as a charity in this field. We are concerned that there was no meaningful consultation with disability groups before regulation 7 was laid down, wherein it may have been made clear that the exclusion of a disability clause from the regulations would not be in conflict with women's rights.

As new laws are laid down, there is an obligation to wrestle with equality issues and, in the case of maternity issues, to ensure that we can support women who find themselves pregnant with a baby affected by Down's syndrome without coercing them towards abortion, subtly or otherwise. In Great Britain, the latter often takes place, as around 85% of women terminate following a positive screening result. Research shows us that women and their families are happy with their lives. We know that, with the right focus, we can further improve the health outcomes for this group. As we do for other social groups, our charity strives to achieve that aim.

Whilst we understand that there are many, many people of goodwill in the health services in the UK, the presence of a disability section in our abortion law has become problematic, and led to the promotion of abortion for disability, the perpetuation of disability stereotypes and health inequalities for this group of people. In a country that chooses to hold equality so dear, we should definitely address that. Thank you, Chair.

The Chairperson (Mr Gildernew): Thank you, Dr Corcoran. Lynn, would you like to make some opening remarks, please?

Ms Murray: Sure. Thank you, Mr Chairman, for allowing me to speak to you again today representing the Don't Screen Us Out campaign. I reiterate that our campaign represents people from a broad section of society from individuals who give birth to babies as teenagers to those who give birth well into their 40s. Consequently, our supporters hold a broad range of views on lots of issues, including abortion. However, many of us are united on the matter of disability discrimination.

The United Nations Convention on the Rights of Persons with Disabilities has previously directed the UK to ensure that abortion law does not discriminate against disability, nor should abortion law perpetuate stereotypes. That is why we support Paul Givan's Severe Fetal Impairment (Amendment) Bill's amending of the Abortion Regulations (Northern Ireland) 2020 to remove severe fetal impairment as grounds for an abortion. Women who are struggling with the idea of a future with a child with a condition such as Down's syndrome deserve emotional support. What they tend to be faced with is the offer of an abortion, which sends out the wrong signals about their future and their life with disability. Down's syndrome is not a tragedy; it is a revelation.

To illustrate that, I will quote — I think that Liz referred to this — the Royal College of Obstetricians and Gynaecologists' recent statement about supporting women in screening. It said:

"Some parents whose babies have been identified as having a higher chance of Down’s syndrome, Edwards' syndrome or Patau’s syndrome, and who have decided to continue with the pregnancy, have reported being asked repeatedly if they want further diagnostic tests or an abortion. They report having their decisions challenged and being pressured into changing their minds."

We still have a cultural problem with attitudes towards people with conditions such as Down's syndrome. By its very existence, a section in abortion law that promotes disability abortion perpetuates disability stereotypes. It falls short of the standards of equality. Last month, Tommy Jessop, an actor who has Down's syndrome and who recently appeared in the popular BBC crime drama 'Line of Duty', publicly said:

"I want to see people with Down’s syndrome treated equally with others before and after they are born. We are the only group of people in the UK where people try to end our lives before we are born just because we have Down’s syndrome. This is not fair. It scars our lives".

Shortly after Tommy's comment was published in the media, Richard Dawkins, an eminent scientist, talked on RTÉ about the morality of bringing a child with Down's syndrome into the world. He used the high rates of termination to support of his uninformed views, claiming that the amount of suffering goes up when a child with Down's syndrome is born. All that is plausible to him. Of course, he had no evidence. He claimed that happiness would be increased if a woman had another child without Down's syndrome or even one of the other congenital conditions, including blindness or deafness. The

3 professor said that it would be "wise and sensible" to abort when a baby is found to have a screened- for condition. While what he said is shocking to many people who understand what a diverse society is, many on social media defended his position. Indeed, the law in the UK, as it stands, serves his theory well. I am sure that he is well aware of that: his confidence in making those remarks confirms that much.

Last week, Brian Wilson, who was a member of Tony Blair's Government until his retirement from politics in 2003, published an opinion piece about Heidi Crowther's efforts to change the law around disability abortion. He said:

"Does the right to equality (and this is not a general debate about abortion) prevail – or is this the one form of prejudice that liberal society is willing to endorse?".

The crux of the matter is that Down's syndrome births in Europe have halved since the introduction of prenatal screening. As Tommy Jessop said, this is a problem for people living with Down's syndrome. The Royal College of Obstetricians and Gynaecologists also acknowledges the issues that women are facing in pregnancy. We ask you to consider whether the section on disability abortion is helping minority groups or if, chiefly, it serves to perpetuate a view that disability equals suffering.

That is all that I have to say at the moment. Thanks.

The Chairperson (Mr Gildernew): Thank you, Lynn. Thank you, both, for those presentations.

Elizabeth, you said that counselling and care pathways simply do not exist. That issue has been raised in a number of sessions. What type of counselling and care pathways would need to be in place to better support people?

Dr Corcoran: I sat in on the earlier session and want to fill in some gaps.

If a pathway does not exist, doctors will struggle to construct the right care package that a patient needs. Very early on, a care pathway around termination was created. That supports doctors and health professionals to support women when they make this choice. We were involved in working with Positive About Down Syndrome and St George's Hospital, which was mentioned this morning, to make a care pathway for women who have a high chance of carrying a baby with Down's syndrome. These pregnancies have higher rates of being affected by stillbirth. They require increased numbers of scans. Psychological support should be provided to help parents to adjust to this change in a pregnancy that they may not have been expecting. High-quality care for women who would like to continue would undoubtedly help parents to better adjust to the care. The research backs up that they would be better adjusted and ready to care for the child that they will have.

I do not know if I have answered your question 100%.

The Chairperson (Mr Gildernew): Could you outline some of the practical support measures that you, as a doctor, think are lacking here and that would need to be looked at to reinforce the support network?

Dr Corcoran: As soon as a woman is identified to be carrying a child that may be affected by Down's syndrome or another condition, she is off-piste. She is not on the conveyor belt that the antenatal screening programme creates, where you go along like a good patient and have your blood tests and scans. The woman's not going along to those creates the dissonance and stress. We often see that women are offered terminations in the same appointment or very soon after.

Women who do not want to have a termination need more information. That is first thing that the person needs. Even before they enter the screening pathway, they need to understand the conditions that are being screened for so that they can give clear, informed consent. A lot of times, people may continue with the pregnancy anyway, but they do not realise when they are joining the screening pathway that they will potentially reach a decision point. So, first of all, there needs to be improved dissemination of up-to-date information on conditions such as Down's syndrome. We have been working with the fetal anomaly screening programme to try to improve its booklets and have the most information on Down's syndrome, including that people with Down's syndrome are likely to attend mainstream schools and live independently with some support. We need to improve information at the point at which women decide whether or not they want to go on to the antenatal screening programme. Down the road, if women choose to be screened and are shown to be higher chance, that

4 information needs to be disseminated again. People should be allowed to have contact with organisations such as Positive About Down Syndrome, where they can speak to a trained counsellor who can help them by giving the most up-to-date experience about what life is like living with Down's syndrome.

That is one of the things I would set in contrast with some of the stories you heard this morning from the medical professionals. The one thing that they do not talk about is the social experience and what it is like to live with this disability. Doctors are very good at memorising lists and reeling them off. That is what they do in these situations. They are doing their duty by telling people the chances of the baby having conditions that might affect their heart, but they do not talk about the research involving thousands of people with Down's syndrome who say that they are happy with their lives. That extremely important information is rarely handed to the woman when they are told that their child has Down's syndrome. The news is given to them as if it is a death sentence. I would love to see the handing over of up-to-date information being safeguarded in law. The offer of counselling, should the woman want to take it up, is really important. As was mentioned, fathers are an important support as well. Fathers are often used in questions such as, "What would your husband say if you continued this pregnancy?". That often comes up as a reason in pressurising women to terminate.

I disagree with the evidence that was given this morning about women not being pressured. That is simply not the case, going by the stories that we are hearing. We trust women and the stories that they report to us. We are seeing what I like to describe as medical gaslighting; women are being asked at every appointment, "Are you sure you want to continue? What would your family say? What would your children say? Do you really think you could cope with this pregnancy and this baby?". That is discrimination by proxy to the mother, as far as I am concerned. We need a care pathway that is approved by the royal colleges and set by the National Institute for Health and Care Excellence (NICE) and other bodies as best practice so that we can hold that against bad practices that are going on and being reported to us, as third sector organisations.

The Chairperson (Mr Gildernew): It was equally highlighted in some of the earlier sessions that a full range of support is not in place.

We heard in previous sessions that the 24-week limit, the screening issues and all of that could lead to a ticking clock that forces people into making decisions sooner or without full information. What is your view on that?

Dr Corcoran: That is not what we see. It is more the case that, when people are given a diagnosis, they are offered termination as a matter of course. We are a few years ahead, so you guys can see what it could look like for you. We see that it is institutionalised and totally routinised: when you receive a diagnosis of Down's syndrome, the natural next step is to be offered a termination. That is backed up by the 'Sharing the News' report, which is available online for anyone who wants to look it up. That involved 1,600 women who had recently given birth. They reported that they were offered a termination straight away.

On a "ticking clock", women in the UK are not given a cooling-off period as it is. Often, when women are given time to cool off and have time to read up-to-date information, they decide that they want to continue their wanted pregnancy. I just do not see that that is an issue. Pregnancies that are affected by Down's syndrome are detected early enough that those conversations can happen in a timely manner, but cooling-off periods, in which to receive the most up-to-date information, are needed. That is the biggest time issue.

The Chairperson (Mr Gildernew): Thank you, both, for attending the Committee this afternoon. I appreciate you coming along and for the evidence that you provided us with in written format and here today. I wish you both all the very best in the time ahead.

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